Jeanne McFetridge of West Caln was diagnosed with stomach cancer in September of 2002, just over a year after her father, James Evans of East Whiteland, passed away from the same diagnosis. Less than a year later, she had died.

At only 22 years old in 2011, Laura McFetridge, Jeanne’s daughter who lives in Phoenixville, started experiencing acid reflux, a symptom her mom lived with for years. An endoscopy found three cancer spots in her stomach, which is considered stage one stomach cancer -- the lowest ranking.

“To hear that, you have cancer, no matter what cancer it is, it’s kind of like, I’m going to die,” said Rachel Wick, of Caln, Jeanne’s oldest child whose endoscopy also found cancer cells in her stomach lining when she was 28 years old.

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“And especially seeing our mom go through it and how quickly it had spread,” said Laura McFetridge.

Today, the family knows that Evans and Jeanne McFetridge had a mutation on their CDH1 gene and died of Hereditary Diffuse Gastric Cancer, or HDGC. Offspring of mutation carriers have a 50 percent chance of inheriting the mutation and approximately three out of four mutation carriers will develop diffuse gastric cancer, according the No Stomach for Cancer’s website, a nonprofit organization that promotes research and awareness of stomach cancer.

The gene mutation was first discovered by a research lab in New Zealand in 1998, and after Evans’ death and Jeanne’s diagnosis, the family sent both of their blood work to the lab. But it wasn’t until 2006 that they confirmed the gene mutation at a clinical lab in Detroit.

Since then, four out of Jeanne’s six siblings have tested positive for the gene and have gotten total gastrectomies – the other two tested negative. Four out of Jeanne’s five children have tested positive for the gene mutation and three have had their stomachs removed, including Laura and Wick. Joe McFetridge has the gene mutation but just graduated from college and isn’t ready to handle life without a stomach.

“I’ve definitely thought about it,” said Joe. “I’m not really in the place in my life where I’m ready to handle all the implications of that surgery. And so right now my goal is to kind of get my life and career where I want it to be and so I can be able to support myself and have some kind of contingency plan for life after that.”

The youngest McFetridge, Annie, hasn’t been tested for the gene mutation yet. It’s just a blood test, but that doesn’t mean it’s easy.

“It was scarier to get the gene test for me because it was 50/50,” said Rose Evans, Jeanne’s sister who now lives in the Boston area. “It’s a coin toss; you’re either positive or negative.”

But for Laura McFetridge, the surgery was scarier because after she had a sudden onset of symptoms, she knew she had the mutation, she said.

“I got (tested) because I was starting to have really bad acid reflux which my mom had suffered from for years,” said Laura. “To me it wasn’t a big shocker” when she tested positive for the gene.

For Laura and Wick, doctors found cancer cells before they had their stomachs removed. But for Megan McFetridge, the second oldest of Jeanne’s five children, and Rose Evans, there was no sign of cancer prior to surgery.

“It’s a diffuse cancer because it doesn’t form solid tumors, it kind of like spreads around,” said Teresa Feeney, Jeanne’s sister who lives in Robeson, Berks County. “It hides in the linings.”

So while people with this mutation but no cancer signs or symptoms may decide to get a preventative gastrectomy, “when the pathology that’s done on the stomach afterwards, early cancer cells are found 70 percent of the time,” said Feeney.

However no cancer was found in Rose Evans’ pathology, although she said she doesn’t regret getting the surgery.

The stomach performs three major functions, according to Feeney. It holds food, regulates the rate at which food moves into the small intestines, where digestion takes place, and helps break up food.

“We eat very small meals, kind of just grazing all day...You need to take time in between bites, that’s how you work with regulating the rate at which everything’s moving in the small intestine because everything’s going right into the small intestine,” said Feeney. “So basically eat slowly; chew the food very, very thoroughly.”

It has also been a trial and error process for each family member, as their bodies have reacted differently.

“It takes about a year to get what your normal is going to be,” said Wick.

But there are more challenges to life without a stomach than just diet.

“To me the scariest part was after the surgery all the emotional stuff that you go through,” said Laura. “It takes you a while to get back to somewhat of a normal. You have this big scar, you don’t have a stomach, you’re sick all the time.”

And as a young adult food is a big part of dating and the fatigue that comes with the issue makes it difficult to stay up late and have an involved social life, said Wick. And for her, another challenge came when she got pregnant.

“I was terrified,” she said. “I barely get enough nutrition for myself, let alone to have a baby.”

However, she has two healthy young boys. But with children, brings concern that they have inherited the gene. Family members agreed that they would like to see more research so that future generations don’t have to get a total gastrectomy.

“This is a cancer that we don’t know enough about it,” said Feeney. “There are people with this gene mutation who go on to lead very long, relatively healthy lives that never develop stomach cancer.

Are they doing something that the rest of them aren’t? Or are they just dying of other things before the stomach cancer gets them?”